When things get out of control. What to do?

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When things get out of control. What to do?

Postby Tim1967 » Thu May 08, 2014 7:16 am

My Name is Tim and please realize I am venting here. Although I mean what I say I am not in any immediate danger. I plan on being as blunt with my doctor I see again in a day. But I am at a point where I wonder what's the point of continuing? I have severe rectal, Scrotum and groin pain. Its like nothing I have ever experienced and has been worsening over the last 6-9 months. But its been escalating quickly recently. I have seen a neurologist and a pain management specialist. I did the trial spinal stimulator. It was successful to a point. But still leaves me very very uncomfortable. I have to wait 1 month before I get the real one put in. I worry its not going to be enough but the combo of it and meds may be.

For the last several months every day and every night is the same. It hurts to sit, to lie down and now to stand. In the day I am in allot of pain. At night its unbearable. I simply move from one position to the next and I never find one that works so I literally move every few minutes. If you could film my night It would probably look sorta funny. I have used sit baths full of ice water on my privates just to get that severe change of sensation and get just a few moments of my pain being tampered down. I have tried every position you can think of, many very comical looking, to stop the pain so I can just rest, or sleep even. But I never find one. If I do get lucky and get some sleep. I wake up, and for a moment, I am pain free. Then, 10 min after waking. It all starts over again. Only very high doses of pain meds at night will make it tolerable. Before things got so bad. I had just got off heavy duty pain meds. I cant take cymbalta or SSRIS. I don't do well on Lyrica or other such drugs. Cymbalta was the only thing that worked but had severe side effects. I am going to try a low dows to get me through this next month.

I have to admit in my mind I am starting to tell myself if this doesn't get substantially get better by whatever means, then there is no point is going on. RIght now I have very little quality of life. All I do is get up, sit for 2-3 minutes, stand, sit, repeat. The everlasting quest for any position I can be remotely out of pain. I have not a single position or place of comfort I can find. I can sit for maybe 5-10 minutes before I must get up. What kind of life is being at a level 9 pain and not able to sit, lie, stand, and now even walk? I can't have sex. I can't work. I cant travel. I can barely take care of myself. I can no longer do my hobbies or art. I have lost all but 2 friends. I tried to walk 5 blocks today, and my scrotum pain became so intense, I doubled over and had to stop every few feet just to make it home. This just seems to be too much. But know I am always honest with my doctors and will let them know how desperate i am getting... Just needed to vent. Thanks for anyone who read this far!

So my pain management doctor did say he would help me get through this next month if needed, whatever it takes he said he would help. Thats a lot coming from him. And that gives me hope. What doesn't is everything I am doing is to mask the pain. Not make it better. I am already in so much medical debt its ridicules. But I will call him tomorrow and explain where I am at. I hate to undo all the work I did getting off heaver long term pain meds. They don't seem to help with neuro pain accept in large doses... But I just do not know what else to do. At some point quality of life trumps whatever meds you may have to take to make life bearable. And this is not bearable. :evil: Sorry just needed to vent. I had a few days during my trial stimulator where things were 50% better and even that was still not... great. Normally 50% would be like Woo hoo! But if you're at the top of your pain scale. Half is still very very uncomfortable if you can't rest in any position.... I just need a friggin break. A few days pain free. One real nights sleep! Blah!

Sorry I don't mean to be dramatic. Its not normally how I am. I keep telling myself I need to get through this month.
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Re: When things get out of control. What to do?

Postby Positivepoppy » Thu May 08, 2014 8:09 am

You will get through this month and it can be therapeutic to rant sometimes it helps to calm things down as you compose a post. I think of recovery in terms of hours and days as it helps me not to project too far ahead. There is no rhyme or reason. To this horrific pain, I've had a nasty flare since Mon and massively understand what you are going through, feels like someone is clawing and slashing my dignity with shards of glass!
Stay positive and I know you'll have better days ahead take care
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Re: When things get out of control. What to do?

Postby Violet M » Sun May 18, 2014 3:39 am

Tim, I see you are in Santa Cruz, CA. Is there any way you could possibly get up to see Stephanie Prendergast or Liz Rummer even once for an evaluation? There is also a possibility they would know someone good who is closer than 90 minutes drive for you.

I saw your post where you said you couldn't have nerve blocks because of the steroid. Maybe you could do one with marcaine (no steroid) just for diagnostic purposes.

I understand how difficult sleep deprivation is. I had pain in all positions too and sleep was extremely difficult on many nights. Clonazepam helped quite a bit with sleep. Maybe something you want to try.

Hope the neurostimulator is successful for you. ;)

PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Violet M
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Re: When things get out of control. What to do?

Postby Patty » Thu May 22, 2014 3:45 am

Do you have a diagnosis? I am all too familiar with no qualify of life with pain day in and day out and just needing a break. I know where you are believe me. I was just told by the 10th doc I saw last week that when it comes to pain in the pelvic area to just forget about getting an accurate diagnosis.....we just have to find a way to get out if pain.
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